Fibromyalgia Support Group for Surrey and Sussex

Launch Day – Fibro Support Guys London
Patsy Baker writes

For a long time Jo Fisher, Daniel Austin and Prof Davies have wanted a support group at Guys Hospital for the FMS Clinic but for a long time funding and all else that goes with that seemed to be passing like ships in the night. So at last it was going to happen on June 1st 2009.

Getting the funding was the big issue, and that wasn’t a complete success by only being granted one fifth of the original bid. So the process of actually launching was one of very mixed emotions. We have done as much as we can professionally with such a tiny fund. It was a glorious day and I was completely blown away by the number of volunteers that turned up utterly enthusiastic. Everything was put in place very quickly and the whole display looked terrific, colourful and very professional.

The therapists who came were run off their legs all afternoon and when we got to 6.00pm - opening speeches and so on, plus the movie - all the therapists still had two or three people each at each table so it was a pity to ask people to come through to the seating area for the formalities – and give the therapists a break!

Unbeknown to me Prof Davies mid to late afternoon came to peer over the atrium walkway and later said to me that there were well over 100 people – it went to 150 at one point. Not bad for just helpline and our database contacts.

Well, if I wasn’t nervous before, I certainly was when I went to the front of the seated Fibromites and realised I had to speak!

I looked at this sea of faces and was so touched to see them happy, chatty and so pleased that they had found somewhere to come to and also discovered so much of the fibromyalgia that affects them and their family so badly. Most of these people I had spoken to on the phone or emailed and I felt they were family.

The email and phone calls after the launch proved very much that my feelings were very much theirs too.

So I think we achieved what we all set out to do, find our market place and our customers and empower them with the knowledge to be able to understand fibro and help themselves.

Since the launch we have gained members, loads of wonderful volunteers, and footprints for six other groups in Greater London as well as Guys.

Amongst the volunteers are Zarana Mehta, pharmacist, who will help people with all aspects of their medication and Angie who professionally deals with DLA issues and is willing to take our members on to advise them.

I have done an interview with a pharmaceutical magazine and been approached by a TV production company doing a documentary about unusual illnesses and levels of treatment – just up my street and wonderful publicity.

We have been given some great items - a good collection of library books and projection wall screen amongst them.

The programme at Guys is every quarter if we can, a large launch style day – bigger and better but advertised to other boroughs in London. And regular other monthly meetings of the Support Group as well as other hospital meetings over London.

Just like all support groups we need donations – not just money but help in other ways too.

We have set up a small trading company “some like it haute”. Interiors and crafts made to order, all profits go to paying for all office supplies.

We would be grateful for donations of trimmings, buttons, fabrics, so we can do our ‘sales’ table justice with beautiful bits for your homes whenever we have an event.

There are lots of schemes, lots of ideas and a website that is going to be up by August – sorry it’s been such a pain to get there – but watch the space www.fibroguys.org for all announcements.

Next events

• First support group meeting July 15 2009 - 6.15 to 8.45/9.00 pm Atrium 2 at Guys Hospital. Information and talks networking fun. (Report here)
• September 7 2009 Itinerary similar to launch plus - Atrium 1 Guys Hospital 3.30 – 9 pm. Time and venue to be confirmed.
  Everyone welcome. Especially if you have fibromyalgia.